It's time for Canada to measure up with current data on childhood disability

Most data on the prevalence of neurodisability in Canada is at least a decade old.

The absence of accurate information highlighted in an Op-Ed penned this week for the Toronto Star by KBHN Health Economics lead Jennifer Zwicker and colleague Stephanie Dunn, calls into question how decision makers can design effective policies and programs that improve the social, health, employment and economic outcomes for children with disability and their caregivers.

Transcription of the Nov. 12 Opinion | Commentary follows

“The true measure of a nation’s standing is how well it attends to its children, including their health, safety, material security, education and socialization and their sense of being loved, valued and included in the families and societies into which they are born,” according to UNICEF. Yet how can we measure our nation’s standing when we have stopped measuring the health and wellbeing of our children, particularly those with disability?

Existing national population data is out of date, with the most recent data on Canadian children with disabilities almost a decade old. Three of the four population-based disability surveys for children are no longer active, meaning we lack critical information on the often unmet needs of this group, as well as the out-of-pocket costs paid for by families.

In this dearth of information, how can we design effective policies and programs that improve the social, health, employment and economic outcomes for children with disability and their caregivers?

Take developmental disability. As many as 850,000 children in Canada are estimated to be living with a brain-based developmental disability. They face life-long challenges with mobility, language, learning, socialization and/or self-care, which impact their quality of life and create special challenges for their families. They also typically have poorer health, lower educational achievement, fewer economic opportunities and higher rates of poverty than children without disabilities.

The nature and needs of children with disability are diverse, varying from child to child, requiring unique combinations of targeted supports. Yet the lack of data means we know very little about how adequately existing services and supports are meeting – or failing to meet – their needs.

As Margaret Chan, former director-general of the World Health Organization, has said: “What gets measured gets done.” Better information on the nature and needs of children and youth with disability is essential for policymakers to predict and plan for improved provision of efficient, equitable and inclusive services and supports.

Better data will also allow for a deeper understanding of the education and employment requirements, how these influence important outcomes such as income, as well as challenges in accessing services for those with disability.

A few provinces are leading the way. Alberta established a child and youth data lab exclusively dedicated to understanding the impacts and policy needs that will optimize the well-being of its youngest citizens. The Manitoba Population Research Data Repository is a comprehensive collection of administrative, registry, survey and other data relating to Manitobans.

Yet these initiatives only partially address the problem. They don’t describe the current or changing prevalence of disability across Canada. Nor do they provide much-needed national longitudinal data to determine the well-being of children in different provinces. They also are less helpful in designing and evaluating policies and services in other provinces or territories.

How do we resolve these important issues?

In the short term, increased coordination of existing repositories of data on this population is needed, as well as better access for researchers and analysts. Linking provincial-level administrative data is another promising possibility to improve understanding of the economic and social impacts that children and their families experience.

In the longer term, federal investment in national longitudinal data on children and youth with disabilities is needed. With needs identified, they can be addressed.

Fortunately, Canada has a world-class network of interdisciplinary clinicians, researchers, patients and family stakeholders with CHILD-BRIGHT and Kids Brain Health Network who met in Toronto for a conference last week with the goal of doing just that.

But this cannot happen in the current lack of information. Failure to act will inevitably leave some children behind and will have long-lasting ramifications on the lives of our children and the broader society.

It is time for Canada to measure up.

Jennifer Zwicker is an expert adviser with EvidenceNetwork.ca, a director of health policy at The School of Public Policy and assistant professor in the department of kinesiology at the University of Calgary. Stephanie Dunn is a research associate in the health policy division at The School of Public Policy at the University of Calgary.